Boy Wants to Help Sick Pal, Out-Raises ... Everyone

Dylan Siegel's best friend has glycogen storage disease

By Evann Gastaldo,  Newser Staff

Posted Sep 27, 2013 7:45 AM CDT

(Newser) – Dylan Siegel is just 7 years old, but he's already raised more money for glycogen storage disease "than all the medical foundations and all the grants combined. Ever," says Dr. David Weinstein, who studies the rare liver disease at the University of Florida. How did Dylan do it? The little boy's best friend, Jonah Pournazarian, has the hereditary disorder, so when Dylan was just 6, he told his parents he wanted to raise money for Jonah. They suggested a lemonade stand or bake sale, but "he's like 'Don't patronize me. I want to do something big,'" his dad tells ABC News. By the next day, Dylan had written a book.

Chocolate Bar came about because Dylan uses the term "chocolate bar" to mean "awesome." The book lists things that are "so chocolate bar," like Disneyland, and ends by saying, "I like to help my friends. That is the biggest chocolate bar." The family had 200 copies printed for a school event; they sold out in hours, bringing in $6,000. Now the family is selling not just books but T-shirts, tote bags, and cellphone cases, and has raised $400,000 so far. The money has helped fund Weinstein's lab—which came within a day of closing—and Dylan and Jonah even received an award (that usually goes to adults) from a rare diseases advocacy group.

  (YouTube)
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An HLN report on the boys.   (YouTube)

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